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Scan results

Hi ladies

My oncologist is pleased with my scan..all stable and some more sclerosis of bones which she says shows a partial response

That’ll do me...I’ve felt sick all day as my appointment was 5pm..

Barb xx

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Wonderful news! I'm so happy for you.

Sandra

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Oh thanks Sandra..such a relief..just need pain sorting..I may have to take the morphine slow release if nothing else works..don’t want to though

Barb xx

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I took that it works really well x

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PS I think the Citalopram might be starting to work - how about you? X

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Yes I think I see light at the tunnel end although I feel crap with all the painkillers so sometimes it’s diffic to know which drug is causing symptoms

I can’t remember if I told you about the acupuncture..she put some little poppyseeds on plasters on inside of my wrists to stop nausea..I just press on them if I feel quesey..seems to help bizarrely

Glad you’re improving with citalopram

Barb xx

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Thanks for sharing this tip about nausea relieve. It's pretty amazing

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I know..I was a bit sceptical but it’s worth trying anything..nothing to lose and it worked a treat

She also put a poppy seed plaster just below my tummy button to help with constipation which is a side effect from the painkillers..I think it’s helping

All the best to you

Barb xx

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YEY!!!

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Thanks so much

Barb xx

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Hi Barb,

That is brilliant news! I know you were feeling nervous, so now you can relax a bit and celebrate! Have a good evening.

Sophie x

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Nervous not the word..my blood pressure was sky high and I thought I was going to be sick in the waiting room..anyway I was pleased with stable

Barb xx

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Hi Barb,

I'm so sorry to hear that your blood pressure was raised and you were feeling bad. I know what you mean about feeling sick. I sometimes get that sick to the pit of my stomach feeling too as I am sitting in the waiting room with the other patients. It's horrible, isn't it? But I am so pleased you are stable. Have a good night.

Sophie x

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So happy for you!

M

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Thank you..another hurdle crossed

Barb xx

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Fantastic news!

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Oh thank you..I was so scared

Barb xx

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Great news! 😊

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Thank you Julie..I’ll relax now..till the next one!!!

Barb xx

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Me too, with mine! :-)

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Oh Barb, I am so happy for you!

xo Jade

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Thank you jade

A respite for a little while

Barb xx

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All Stable. Perfect for you ! 🐴

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Great news, Barb! So glad to hear that things went well. Stable is good, in every sense of that word! Speaking of which, hope Bugsy and Monty got sone extra carrots when you got home! Sorry you had to wait all day for good results but happy they turned out well!

Dave

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Hi Dave

Thanks for your kind post

I haven’t ridden these last few weeks as the pain is bad so I’m going to start taking slow release morphine although I don’t want to but I need to keep riding or I’ll get more depressed

Has your wife managed to get on board?..

give her my best wishes

I think monty and Bugsy are enjoying a break though my daughter rode them at the weekend..we have storm Gareth here at the moment so I doubt I’d be riding anyway

Barb xx

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Great news Barb 👍🏻

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Great news Barb. Horrible lurching from one scan to the next isn't it? Mine stable so far and feeling more upbeat. I have taken to wearing a beret when out as my hair is VERY thin! B....r Fay

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Thanks Fay..yes it’s the waiting and fear

I bet you look like a French girl in your beret..very stylish

Barb xx

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Partial response to Ibrance? X

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It means my bones have partially responded and become more sclerotic I.e. harder so hopefully no more fractures

Barb xx

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Is that from taking Ibrance then? X

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No it’s the combination of that and the letrazole and denosumab..the Ibrance and letrazole work in conjunction with one another as far as I’ve gathered

Before Ibrance ladies just took letrazole on it’s own and had much success with it..it’s the one that stops oestrogen being converted from androgens by inhibiting the aromatase

Sorry I explained that badly

I think we all forget the humble letrazole that’s been around donkeys years and tend to focus on Ibrance because it’s new

Barb xx

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I’m thinking of stopping Ibrance because it makes me feel awful x

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Give it time unless you are truly having horrible side effects and never without discussing with your oncologist first. When you see a positive result it will have been worth it. You're on a bunch of different new drugs so wo knows which one is causing it?

Sandra

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Thanks Sandra, I’m seeing her next week. I’ve really had it with feeling rubbish. Week off now - yey! X

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Ask your oncologist to reduce Ibrance dose..are you on 100 mg?

Apparently the 75 mg dose is supposed to be as effective from what I’ve gleaned

Barb xx

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Yes I asked last time and she said no but it’s worth a try again I guess x

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Hi there

Did you manage to get your Ibrance dose reduced...I think you were thinking of asking

Barb XX

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No she said no again. I think she is worried about my liver. She doesn’t think Ibrance is causing the fatigue. She thinks it my lack of activity - vicious circle! X

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PS do you take anti sickness medication with your Ibrance? X

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I was swapped from faslodex to letrozole in January and had a really horrible month, both physically and mentally. At the end of the month I took an a4 sheet to my oncologist listing everything, he scanned it and said that 75% of the list were common effects of letrazole. He put me back on faslodex and I was back to myself, so check with your oncologist where the side effects are coming from 🙂

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How long were you on faslodex and why did he swap you? Do you take Ibrance?

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I was being treated privately and the oncologist started me on faslodex and ibrance 125mg, with good results and few/no side effects. I was on it for 11 cycles. I had to return to NHS care in December and the NHS don't allow faslodex to be prescribed before letrozole so I had to change. I was worried about it as I reacted poorly to tamoxifen. I moved back to faslodex after 4 weeks of letrozole and immediately felt better. I'm still on full strength ibrance. My GP mentioned that he'd recently seen another patient who had reacted badly to letrozole.

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Oh that’s interesting, I think it’s the Ibrance for me but it’s all such a cocktail of drugs it’s hard to know. I’m still feeling terrible since the end of week 1 and just finished week 3 pretty much 2 weeks in bed. Hopefully next cycle will be better. It will be number 3. I wonder why privately they give you faslodex first? Maybe it’s more expensive? I asked to stop Ibrance for a month for my legs to recover from surgery and they said if I wanted to be funded I can’t stop and start as I wish, I’m either on it or off it apparently. I feel like I should stop it but that’s a brave decision x

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Faslodex is more expensive than letrazole so the NHS insist that that is used first. The oncologist told me that clinically it makes no difference which is used first.

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And is this for ER+? I will ask my onc on Tuesday about it. Thank you x

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Yes I'm er+ and her - 🙂

the faslodex monthly injections aren't for the feint hearted, though with everything you have already been through they would be a walk in the park!

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Hmmm getting less excited with that news! How long have you been given them for?

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Now on that combination until it stops working 🙂

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Has the combination actually reduced your tumours?

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Like Barbara my mets are in my bones. The scan showed areas of hardening - again like Barbara.

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That’s interesting re letrazole vs faslodex

I’m being treated privately and was put on letrazole Ibrance and denosumab..faslodex wasn’t mentioned..I was clueless anyway and just was pleased I didn’t have to have chemo to start with..maybe letrazole is contributing to my joint pain?.. hard to know

Barb xx

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That was one of the side effects I suffered from. Very painful joints and bone pain. But I also got very low, as you know that is unusual for me

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That is interesting as Barb and myself have both had to turn to antidepressants. I always felt my depression was drug induced but I thought it was the anaesthetic x

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I had a lot of upheaval around Christmas and January and I would have attributed my low mood to circumstance if it hadn't lifted almost with hours of stopping the letrozole. My oncologist attributed it to the drug. My head also felt foggy and I struggled to remember things.

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Don't forget that not all of us are on Ibrance and are still doing very well.

Sophie x

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Yes I was thinking of you actually. I’ve been researching going to Mexico but I think it might just be false hope so I’m back to square one. X

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There are many options available that are worth looking into. My plan is to use off-label drugs in combination with my current treatment. I'm just waiting to hear back from my hospital pharmacist before I proceed.

Sophie ❤

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I looked in to that on your recommendation. What was the clinic called again? I was reluctant as I didn’t want any more side effects, what does it say about that in the book? I’ve been side tracked by Mexico for the past few days only to realise that it’s too expensive and certainly not a definite outcome. My kids are so little I really need to find some hope for real recovery. X

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Can I get back to you about that tomorrow?

Sophie ❤

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Yes please! Sounds like your plan has moved on since we last chatted. I’d be very interested X

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Morning Ellie,

The clinic is called the Care Oncology Clinic (COC) based in America and also here in the UK with a clinic in London. I have not contacted them yet, but plan to do so as I gather more information. Here's a link to an article by Dr Lawenda, who is an integrative oncologist from America. I think you will find it interesting.

integrativeoncology-essenti...

I am also reading Jane McLelland's How to Starve Cancer book. I am taking notes as I go along, and researching things she has mentioned. She is not a doctor, but a patient like us who discovered how to overcome her metastatic cancer and survive.

I looked into take some additional supplements and medications: aspirin (75mg), melatonin (20mg) and berberine (100-500mg). I ran it by a hospital pharmacist and she is going to check for contraindications with my current medications. I am currently taking the following supplements: Adcal D3 (on my oncologist's recommendation), vegan omega 3 capsules (a vegan alternative of cod liver oil), and Montmorency cherry capsules.

What I would suggest is researching different protocols and getting some medical advice rather than going it alone or relying on what I or others on this site have to say. I am not a doctor or medical professional, so cannot tell you what to do, or even say that using off-label drugs will work for you. There are a lot of other things I am also doing to improve my health including radical diet changes, avoiding soya (two hospital pharmacists told me it can possibly fuel oestrogen), regular exercise, reducing stress, taking time to rest and so on.

Sophie x

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Gosh that all sounds very complicated! Well done for understanding it. I’m back to looking in to CBD/THC. Thank you for sharing X

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You're welcome. x

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Look into the Biological Medical center. It's less then 5000 with hotel and airline tickets. I went there 2 years ago and was impressed with the very positive and happy busload of patients heading there ( many of them had been coming for years, some were being weaned off the Hoxsey formula and were considered in remission) from the Americana Best Western where we stayed, which by the way provides shuttle service to the Biomedical center. My tumors kept stable the year I was on it but the diet was a real deal breaker for me. No vinegar, no alcohol, no tomatoes. Do not go to the Holy Grail in Cancun. I spent about 19000 out of pocket ( not peanuts to us) there and only slight improvement from my March scan to the one in November. I felt very let down and terrible disappointed. We were there for 25 days with travel, getting daily IVs of who knows what. To be fair I was going through a lot of trauma and stress with family problems and I've been told that makes healing much harder.

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Do you know anything about other Mexican clinics? I’ve been looking in to CMN it’s pretty expensive so I’d really like a recommendation. If you know or know someone else who might I’d really appreciate it. I’ve just bought a book called hoping for a cure which reviews some but not all of the clinics.

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PS why no vinegar? Does that include cider vinegar?

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Any vinegar. The doctors there told me that it neutralizes the Hoxsey formula which is their main weapon against cancer. That means no ketchup , no mustard no mayonnaise unless made with Lemon juice which people do use a lot for salad dressings and such. I'm a lazy non-cook and all the special recipes to make sure I had a healthy diet even with the restrictions made me give it up. Actually it is the easiest cancer diet I have ever seen. . I was actually allowed to eat some white flour if it was organic and not bleached. (Oh, and you can't eat aged cheeses either. only fresh cheeses.) Like King Arthur flour. They gave me menus for a couple weeks and it would be delicious if someone else would cook for me :-)

I have no experience with any other clinics then those two. The second one was called Camelot cancer care or Holy Grail. Was not impressed to say the least. I did go to The Contreras clinic (Oasis of Hope) to do a checkup and a biopsy on an enlarged and suspicious lymph node but when they tried to find it it had resolved itself and couldn't be located on the ultrasound. It is a very expensive place with good reputation and has helped many people, but at least $38,000. They were impressed at how well I was doing on the Budwig diet and told me to just keep it up and to come back for a checkup in a year which I never did.

Getting back to the Biomedical Center, I would go to them again if I find I can't control my cancer with what I am trying now, because from talking to fellow patients there , I found out that they also do vitamin C and b-17 IVs and other things if they feel you need it, but for me they sent me home with yew capsules , 3 of them 3 times a day, Chinese breast health capsules 4 of them 3 times a day, their immune formula herb capsules, 3 of those 3X a day. Plus the Hoxsey formula to take 4 times a day. lots of things to take. Also got b-17 pills to take 4 times a day but I keep forgetting to take them. Too much stress in my life makes me very forgetful. For that you can take apricot kernals, up to 40 a day. Please don't believe they cause cyanide poisoning. They only poison cancer cells.

Peoples, please check out Patrick Quillans book on "Beating Cancer with nutrition." He was "Dr. Quillin's book should be of value to every cancer patient." --Linus Pauling, PhD. 2 Times Nobel Laureate "...a must-do for those who wish to take an active part in their recovery. --Dr. Julian Whitaker, MD of the famous Whitaker Clinic in Newport Beach, California and author of the world’s best selling health newsletter, Health and Healing "...every cancer physician should recommend Beating Cancer with Nutrition to each of their cancer patients. --Dr. Barry Sears, author of the bestseller THE ZONE" Dr. Quillan has 30 years experience as a clinical nutritionist, of which 10 years were spent as the Vice President of Nutrition for Cancer Treatment Centers of America where he worked with thousands of cancer patients in a hospital setting, he knows what he is talking about.

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Wow that is a great reply thank you. What type of MBC do you have? Do you think the treatments you were given have made a difference in your condition? X

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Awesome news! Keep doing what you are doing and the next scan will be even better.

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I do hope so..it’s a never ending worry..she said she would keep me on the same treatment indefinitely whatever that means..I guess till it stops working

Barb xx

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Barb,

So happy for you! I know the stress of waiting makes us feel so sick! Waiting is killer, but worth it for good news! Hope you feel better and are able to relax! Love, Marianne

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Great news! Celebrate! Ride your horses, kick your feet up and enjoy

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Fantastic new Barb. It is always such a relief to get good scans. Blessings, Hannah

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I'm so happy to hear this Barb. Congratulations!

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That is so good to hear. I know you have been so worried. Now you can relax for awhile

Happy for you

Barbara

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Thank you

I just wish I felt good..in so much pain

Barb xx

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Please Barb, try some Medical Marijuana, I have a MM card and it helps immensely for pain and relaxation and stress. Makes my worries melt away so I can sleep which is very necessary to heal. If you have no MM program where you live CBD helps with mood and pain also and it is known to keep cancer from spreading. Have you seen the Sacred Plant docu-series? John Malanca who is the producer of it, his father -in-law was cured of "hopeless" brain cancer with Rick Simpson oil, which is why he is so excited about it. It does not help everyone though, his wife was diagnosed with late stage pancreatic cancer and despite all efforts died rather quickly, but then pancreatic cancer is really tough, if caught late for sure.

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I’ve ordered CBD oil but live in UK so no chance of medical marijuana here as it’s illegal..I’m hoping for a change in the law so it’s available to people like me

I do hope your sisters treatment is successful it’s horrendous for everyone..

Love to you both

Barb xx

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Praying for you. I can really feel for you having lost one wonderful sister to breast cancer and the other one in pretty bad shape as of now from same thing. She is on cancer drugs like all you girls seem to be and I find much to encourage me on here, that she might be around for awhile yet.

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Great news!!!! Now relax ((( Hugs))))

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Just catching up on here and I am delighted to hear your positive news Barb! Just shows one shouldn’t rely on tumour markers alone ...

And I hope you stay on this treatment indefinitely !

Hope the acupuncture can help with the pain and that it eases soon x

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I’ve decided to take the heavy duty painkillers as I’m miserable and it’s only me who’s suffering

I’ll be having my fourth acupuncture session next week..it’s helping with nausea and calming me but back pain no better..I’m having cortisone shots on Monday near fracture..might help

I forced myself to go to my yoga class this morning..felt rubbish but afterwards felt a bit better

Went to see the movie ‘Green Book’ this afternoon..wonderful film..made me forget pain for a while

I’m sorry to be always moaning..should be happy after scan results

Miserable Barb!!

Xx

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If it makes you feel any better I think you are amazing for being able to go to a yoga class. There is no way I can do that. I found Oxycodone actually gave me a bit of a lift to start with. It is quite addictive though. Have you thought about CBD for pain? X

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Tried CBD..waste of money for pain imo..think need the proper cannabis!!

As for yoga I really dragged myself there but it’s where I’ve gone for years and even the room we practice in is very relaxing so I was glad I made the effort

If the strong meds kick in I’ll ride my horse at the weekend

All the best to you..keep your chin up..not easy

Barb xx

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If it’s Oxycodone it’s gonna work. I was on 20mg modified release twice a day and I was literally high on it. No pain at all. I have weaned off now as I was worried about addiction X

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It’s zomorph 10 mg slow release and I have oxycodone 5 mg for breakthrough pain yours obviously were stronger so maybe I won’t be weird on them

Barb xx

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You might find they chill you out to start with x

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Good..I need that

Just been for a longish walk and managed it..still in pain but mentally it bucked me up..very windy and sunny so blew away the cobwebs

Barb xx

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Happy you feel better Barb. I'm heading for a walk shortly and then hubby is taking me to the city to have lunch which should be great. My laptop died last week so need to get him to help me pick one out. Have a great rest of the day. I started cycle 11 yesterday after getting good lab results. My CA 15-3 was down as well so that was nice to see for me. Of course my oncologist doesn't rely much on them anyway.

Sandra

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Hi Sandra

Hey that’s good re lab results..let’s hope we keep going in this positive trend..I’m going to continue with the opiates and get back on my horse this weekend..well that’s the plan anyway!!..I wouldn’t have ridden this week because of the high winds..he’s a bit flighty even in the best weather conditions..not worth coming off and hurting myself

Enjoy your walk and treat yourself to your new laptop..you deserve it

Barb XX

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Thanks Barb. Positivity and stable are my 2 favorite words these days. Had a fabulous day out. It's an absolutely glorious day here and boy do we deserve it. It has been a long brutal winter. Will have to take it easy for the rest of the day and evening but it was definitely worth it. Hubby is pouring me a glass of my favorite wine as I type so all is good. Hope you get out to ride this weekend.

Sandra

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Ah so glad you had a happy day..I envy you your glass of wine..I daren’t drink while taking these painkillers or I’ll be even more weird!!!

Barb xx

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Awesome news! Very happy for you! ❤️

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Yeah!! Good news. Isn't waiting the worst. Enjoy the results and here's hoping to more good scans.

Kim

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Thank you Kim

Sweet of you

Barb xx

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Hope the cortisone shots help ! But there’s no point being in constant pain , so take what you need at the mo until things ease . I’m lucky to have no pain at present , but did experience it with an old shoulder injury and it got better with time , pain killers and physio/ acupuncture . And l’m glad to see you’re keeping busy as I’m sure this helps with a positive mental state . I am currently spending time with my uni daughter as she starts internship in London next week , so been busy sorting accommodation and planning my trips !! 🙂

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Yes I’m stopping being a martyr..hope I’m not too weird on the meds..ah well whatever it takes

How lovely having a uni daughter..I remember those times with mine..the first time we dropped Vanessa in Bristol I cried all the way home..rips you apart ..

Have fun

Barb xx

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So glad the meds are working! ❤️

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Thanks Tam..all the best to you

Barb xx

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Good news for you! I will have my scan the first week in April and am also nervous! I have bone tumors, as well liver tumors. I am recently feeling some discomfort in my back this past week, and of course I worry that the bone cancer might be growing! I try to trust the Good Lord. I pretty much feel good with the exception of tiredness. I try to nap everyday. Just need to keep go forward! Hopefully my appt. will go well! Please pray for me! Kathy from Syracuse

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